On Day 3 of my Red Shoes Rock to Stop FASD journey, leading up to FASDay, I was driving my daughter back to her grandmother’s house (she lives with her now to attend College) and saw some standing rocks – a local version of Stonehenge – and thought about how some of these giant rocks need support from another in order to stand. This is like the bridge analogy from yesterday’s post. And it got me thinking about pillars – rocks are pillars, but a person or thing can be a pillar.
A person or a thing regarded as reliably providing essential support for something.
We need some solid pillars of success for prevention, awareness, services for people with FASD and support for the people who support them.
This was a good visual to carry on from yesterday’s post about the FASD: A Call to Action in Ontario. Below are the recommendations that came from the provincial consultations – what seem to be the pillars needed for success in addressing FASD.
This submission, prepared by Fetal Alcohol Spectrum Disorder—Ontario Network of Expertise (FASD ONE), calls for a provincial strategy on FASD. A provincial strategy provides an opportunity for the Government of Ontario to take the lead in implementing an action plan that prevents FASD, while ensuring effective services for those affected, resulting in reduced incidence, improved outcomes, and decreased costs.
This document makes recommendations in five areas which are explored in more detail in the full document. They are as follows:
1. Awareness and Prevention
Ontarians will receive accurate information regarding the risks of alcohol use during pregnancy together with timely access to the services they require to abstain from or limit alcohol use in pregnancy.
1.1 Ensure that all Ontarians receive ongoing evidence-informed knowledge about the effects of alcohol use during pregnancy using broad-based, community driven, linguistically and culturally appropriate communication channels, resources and materials.
1.2 Ensure that all pregnant women and women of childbearing age have the opportunity to discuss their alcohol use, the risk of alcohol exposed pregnancy, and pregnancy planning, in a safe environment with well-informed practitioners.
1.3 Ensure that pregnant women who are using alcohol or are at higher risk of alcohol use in pregnancy have priority access to holistic, culturally appropriate, women-centred services that reflect the social determinants of health—addiction treatment, mental health services, health care, prenatal care, safe housing, income stability, food security.
1.4 Ensure that new mothers receive postpartum support to assist them to maintain healthy changes made during pregnancy, to prevent future alcohol exposed pregnancies, to support the development of their children and to prevent secondary disabilities related to prenatal alcohol exposure.
2. Assessment and Diagnosis
Individuals with prenatal alcohol exposure, regardless of their age, will have access to timely assessment and diagnostic services and a coordinated informed response that is appropriate, effective, and linguistically and culturally sensitive.
2.1 Build capacity to assess for and diagnose FASD as part of the assessment of neurodevelopmental disabilities.
2.2 Ensure access to equitable and timely assessment that considers all brain domains affected by prenatal alcohol exposure; ensure diagnosis at the earliest age possible, following up across the lifespan when needed.
2.3 Encourage the integration of FASD identification, assessment and diagnosis into all support services for children, youth and adults.
2.4 Provide a discrete FASD OHIP code so that the prevalence of FASD diagnoses in Ontario can be tracked.
2.5 Provide comprehensive case management support to facilitate referrals.
2.6 Develop a protocol to ensure the transfer of a child’s medical history from the prenatal to the postnatal period to facilitate assessment, diagnosis and referral.
3. Intervention and Support
Children, youth, adults and their caregivers will have ready access to culturally sensitive resources and services designed to address and accommodate their individual lifelong needs. Elements of effective practice inform service provision across a range of sectors—child welfare, education, justice, housing, income security, employment, health, mental health, and addictions—in ways that stabilize lives and maximize potential.
3.1 Define service pathways to ensure those affected by FASD have access to the services they need across multiple sectors.
3.2 Expand service interventions to include effective practices so that individuals living with FASD have access to the services that contribute to optimal outcomes.
3.3 Integrate the expansion of collaborative family-centred service coordination to include respite, case management, education, parenting support, supportive housing and employment, and income security.
3.4 Facilitate the addition of Fetal Alcohol Spectrum Disorder (FASD) as a neurodevelopmental exceptionality in the special education system of Ontario and provide effective programming to support students with this brain-based disorder.
3.5 Support cross-sector, lifelong FASD services that are seamless, personalized and feature ongoing and transitional support.
3.6 Ensure that all families have access to timely, affordable, tailored, strengths-based supports and resources.
3.7 Ensure access to FASD-informed custodial and non-custodial programs and services for victims, accused and offenders with this brain-based developmental disability.
3.8 Establish protocols to ensure the protection of the rights of witness, the accused, offenders and victims with FASD in the legal system.
4. Knowledge Transfer and Capacity Enhancement
FASD education and training will be made readily available to both current and future families/caregivers and service providers in all service sectors.
4.1 Facilitate awareness of and access to FASD education and training for families and caregivers, as well as those in all sectors serving individuals affected by FASD and their families.
4.2 Ensure the inclusion of FASD-specific content in the curriculum of College and University programs including medicine, nursing, midwifery, early childhood education, education, child and youth, occupational therapy, speech and language pathology, physiotherapy, social work, psychology, police, corrections and law.
4.3 Knowledge transfer should include cross-sector collaboration to explore potential opportunities in programming and coordinate and align policies to enhance effectiveness of service delivery and mitigate adverse outcomes.
4.4 Facilitate knowledge transfer and communication among Ontario’s local community FASD networks.
5. Research and Evaluation
Services and resources will be evidence-based, effective, culturally appropriate, and inclusive of the voice of those affected by FASD.
5.1 Encourage the expansion and support of systemic evaluation processes to measure the effectiveness of FASD services and programs in Ontario.
5.2 Encourage the expansion and support of a systematic data collection process to measure prevalence of FASD in Ontario.
And how did the Government of Ontario respond?
While details are still slim, despite the announcement in late April, Ontario announced it would invest $26 million over 4 years for six initiatives:
- Create one-stop access to information/training resources;
- Provide funding for 56 FASD workers to support approximately 2,5000 Ontarians with FASD;
- Support parent support networks;
- Increase access to FASD initiatives developed by Indigenous partners;
- Establish a consultation group to provide advice and feedback to inform implementation planning and prioritization of efforts; and
- Create a research fund and invest in knowledge mobilization.
There is still a lot the Ontario government can do. Their response falls far from supporting people with FASD and the people they support. Click One Response to Provincial FASD Strategy for one response, but in summary:
Autism receives 13x what FASD receives. Prevalence of autism is 1%, FASD is from the low-end of 3% up to some suggest it could be as much as 10%. We don’t know how many people have FASD – that was one recommendation made by FASD ONE – to create a diagnostic code so we can establish numbers. Using the middle percentage of 5% that means there could be 699,150 people with FASD in Ontario. And the government provided funding for only 2,500 people. Completely missing out of the Province’s strategy are funds for diagnostic services, prevention and awareness.
As International FASD Awareness Day approaches if you are wondering what you can do (if you live in Ontario) why not write your Member of Provincial Parliament and tell them that the budget is inadequate and it failed to meet the suggested Call to Action recommendations.